Dear Eve
It is also 1 year since I began my journey, rejected by blood bank because I was too anaemic to give blood and sent to my GP for tests -these came back in the second week of October and I was sent to haematology, no diagnosis just the start of a very anxious time. I still find it hard to believe that I am in this position! I look in the mirror and see my bald head, and wonder how I got here.
I asked my husband how he felt about it all the other day and how he was doing, he shrugged and said he was just getting on with it. I can sense his powerlessness, we can't talk much about it all, there are not really any words needed he just looks at me :-/ He's glad I'm getting better from the sct now but it must be so hard for you partners to watch the change from dynamic and strong individuals into stiff and achey ones.
This is the first year in the 32 years we've been together that we have not booked a holiday, something which we always looked forward to. I hope you get the motor home on the road again.
Helen
Hi Debs
Yes I'm getting hot flushes, before diagnosis they were just at night and I thought it was menopause, so did my GP. Now I get them all the time and the haematologist thinks that as my blood has returned to normal I'm resuming the menopause again. I've been experiencing them for the last 5 years and never thought of hrt as there was such a high risk for breast cancer in our family!!
Helen
PS how is the hair situation, my eyelashes are falling out now and there is no sign of any on my head!:-(
Helen
Bridget I feel I get the same sort of response where I am and am fully consulted too, but I can also see where there are holes in the system, as you say Eve the places are so busy with far too many patients and nurses very pushed for time, as for pharmacy….. I sat in the very crowded waiting room after my sct thinking I was more likely to pick up an infection there than if i'd gone to tesco for my prescription.
A word about trials, testing new medications takes a very long time and the way people respond is so individual. It can take as long as 10 years for full approval of new treatments after the initial trials and only recently have the thalidomide derivatives been in use for 'new' patients on trials so no one knows what the long(?) term effects will be. Mm is also a disease which is immune system based, it presents in many different and confusing ways, and a drug that works on you one week can stop working the next and you have to move to the next drug. I can't see how the medics can do anything different other than give us assurances that the pace of treatment and the sort of treatment is the best of what is currently available at the time, bearing in mind our ages and severity of the disease.
Helen
hi sandy
Hope your stay in frh was ok, I was there a few weeks ahead of you, I'm still steering clear of crowds and people with overt illness but have been to town and done the shopping regularly since week 5. Went to a few restaurants and pubs when i went away this last weekend. I asked at the hosp last week they said my bloods were all ok now and just be sensible.
Hope this helps
Helen
Hi David
There is some evidence to suggest that Zometa has an anti cancer effect ( recent oncology weekly) and all myeloma patients should go on it, the jury is still out as to how long you should be on it.
There is also a question as to should you be on it if you are in remission, as technically if you are in remission there should be no active bone marrow disease. I'm just being given it and accepting that if it helps I'll do anything. I have to have the chalk( calcium) tabs too as my calcium is often low.
Helen
Dai, Just what you needed to hear, here's to long remissions
Helen
Hi Etta
Welcome
I react to the zometa with lethargy, tiredness and muscle ache, I try to remember to take paracetamol an hour before the injection and then regularly for a day or 2 afterwards. I have been on it since feb 2011 and when have forgotten to take it it has been worse. If you can't take paracetamol maybe the team at the hosp can suggest something else.
Helen
Hi Wendy
No idea either but how are you feeling now? hope you are less tired and down.
I had the ' you are in complete remission' blood tests back this week so, despite still feeling pretty sick it was a big boost.
Helen
Hi Dai
Yes I agree with you but have never really thought through the whole process until now, when i have reached the goal of sct and now enter the watch and wait section.
When you first get the diagnosis, the shock and the treatment options are presented to you in such a hurry and you have no real idea how to make choices, we are as you say at our most vulnerable. I know my personal choice was ' do whatever is needed to get rid of this thing as fast as possible' and I really trust my medical team who said treatment was the only option, a crucial point for me was that my anaemia would only worsen over the next few months and I would lose fitness which would make recovery from sct more difficult.
In searching the literature I am not aware of much info on patient perspectives in this disease at all, nor how each case informs another. There doesn't seem to be any recent assessment of how the disease presents in 21st century patients (this disease has been 'known' since 1850 and melphalan for treating it since 1950) also wonder if there is a 'protectionist' attitude towards us mm sufferers that 'if we know less about some of the horrors of the disease we will stay more positive'. I'm afraid I need to know all about it!
What does surprise me is that so few of us seem to have all the info on exactly what sort of mm we have and how the different sorts require different supportive therapy.
The conference you are to attend might answer some questions but I worry that we as patients do not really know what information we need so that we are armed to make the right decisions.
The phrase currently being used in the nhs is' no decision about me without me' and so far we can't even have our blood results emailed to us so that we can ask questions about informed decision making.
Does this make sense or am I rambling? Maybe I'm trying to brain storm and have forgotten how!:-)
Helen
Hi Bridget
Have sent you email with address for hat
Love Helen
The site won't let me finish my previous post?
So I will continue here.
Is the disease still as much of a mystery to medics as it appears in the literature?
I do hope you get some answers at the conference Dai and I look forward to hearing how you get on with it.
Helen
Hi Dai
I hadn't read this before I answered Nadines post but you raise a point that I too deliberated on for a very long time before the sct. I was fitter the day before my sct than I have been for about 5 years, I was able to do a 5 mile walk without pain or tiredness.
I have searched the literature too and read report after report on the funding streams and gold standard treatments until I could not decide the best way forward but I have concluded that sct was my best option based on retrospective material.
We are now in a different world with myeloma, and the new data from America is based on the findings of the new drugs, for which we do not have the long term follow up results yet, it is all so new.
You and I are about the same age, i was anaemic to start with and over 50% bone marrow lost to tumour, we have light chain disease but your light chains were 3500 to start and mine only 800, we both responded to induction chemo, down to 0 in 4 months then stem cell collection, you produced low numbers mine were high. At this stage there is no saying what will happen to either of us because we do not know what our disease is going to do in the future. So we can not compare our selves, we only continue hand in hand on the journey.
Here is where I wonder about the individualisation of treatment.
We are at the cutting edge of changes in treatment, is there a difference in outcome if you delay treatment? By a few months, or years.
Is it ethical to ask patients to consider the watch and wait?
Is more aggressive disease identifiable?
Does less aggressive disease turn aggressive?
Over how long a period?
Hi Nadine
I had my sct nearly 6 weeks ago, it was horrid but I'm getting better every day. It is as Debs describes, like childbirth and you begin to forget about it as you improve. I'm doing the shopping and cooking now and watching the dust doesn't get too deep!
About you, I have 21 and 25 year old children(!) and I don't want them to be part of the horribleness, so I don't take them to clinic and only wanted to see them occasionally while I had the sct, they have enough to contend with and i did not want them to see me in such a low state. I have told them all the details and they know that this illness is not my fault but there is nothing anyone else can do for me, and no matter how hard it is to watch, all you can do is be there, listen, and try to support her.
I found the first few months after diagnosis a bit bewildering, intensive treatment, telling people, working and coming to terms with the fact that I might not see my children graduate, marry or become parents or go travelling With my husband when we retire. I have had to grieve for my life as i knew it and how much it has hurt the people I love and who love me the most.
However, I have had my sct now, I see it as the beginning of the next phase of my life. I have found travel insurance and will get away and I'm just going to try to get back to as near what we had before and let the future take care of it's self.
Don't feel too sad about it, we have no choice about this illness, but we do get the opportunity to tell the peple we care about that we love them. Forever
Helen
Hi Paul
Ah the missing soap.. There you go it's the little things that get you! I worked at jimmy's back in the 80's I have fond memories of the place, I live close to the Newcastle centre so was only going to be in hosp for a few days and come and go as a day case how ever became very ill at day 6 and was admitted for the next 10 days then been home since with regular returns for blood tests. Now am getting much better, about 1 tired day in 4. They say 3-6 months recovery to full function. Again it is an individual thing and everyone has different reactions to the sct, and you don't know how you are going to react until you have the melphalan, but it is the current best treatment especially for the young and fit and we just have to go for it. It was horrible to feel so ill when I've never been ill before but I'm hoping I get a long remission now, again there are no guarantees but I'm a glass half full person, so remain optimistic.
Helen
Hi Paul
Belated welcome, I've been a bit out of commission lately.
I was diagnosed with IgA lambda light chain myeloma in feb, was on RCD arm of myeloma xi trial and just had sct 5 weeks ago, doing ok now.
My light chains dropped from 800 to 11 (normal) in the 4 cycles I had. So -good response and on to sct.
One thing I'd warn about and that is the cumulative effect of the chemo and like you I went away in the first 'week off' and was fine walking etc. However, as the months went on I found the week off was one where I just slept and kept going with work but was gradually getting slower and slower, when I stopped chemo and before the stem cell collection it took several weeks for me to get back to pre chemo fitness. As said by many, listen to your body and try not to overdo it. I also found I felt much worse when I was cold or hungry and as I was so tired I often ignored these, to my later cost, then you get snappy and horrid with the poor old nearest and dearest! ( well I did try not to but……)
Helen
